Isn’t it crazy how life brings you lessons that you would never expect to be challenged with. The best part is we can overcome anything if we have the right focus and know that it will get better. It doesn’t matter who it is, your own kid, a neighbor kid, someone you follow on Instagram or your cute little niece there is nothing better than the support and understanding that you really can do something to help.
I remember the day my sister told me that she was pregnant and that she was going to be having a little girl. I was living in Orange County, California going to school. I was trying to figure out if I wanted to continue my schooling out there or maybe try to focus more, move home and finish my degree. I had missed a lot of the first few years of my nephew and wanted to be around more for both of them. I decided to move home and be more active in the lives of these fun cute kids.
When you have a young child around you tend to compare them to other kids. I do it all the time with my son now. I will see a kid his age doing one thing and then wonder why he isn’t doing it, or vice versa. I think it’s in our nature to compare and I was doing that a lot with my niece.
At the time I was working for a financial institution and one of my colleagues had a little girl the same age as my niece. We had a meeting that she brought her girl to and I noticed that she was crawling all over the place. “Why doesn’t my niece do that?” I thought to myself, but quickly ignored anything I was thinking because I know that all little kids develop at different times. Plus, it wasn’t like she was my child and if there was something serious my sister would be all over it.
A few months went by and we had another meeting at work. This time my friend’s daughter was walking around. “How long has she been doing that?” I asked my friend. “A couple months I think” she said. Wait, a couple months? My niece still isn’t crawling. She would scoot around with one leg, but never really crawl and for sure wasn’t walking. This was when I thought maybe there is something wrong.
Now, when I say something wrong I don’t mean it in a negative way at all. Being diagnosed with anything doesn’t always mean that a child or even an adult is worse off because they have been placed into this situation. I just knew that life was a little harder for my niece, but how do you tell your family member this?
I would mention that I would see other kids running around that were her same age and maybe she should go get her checked. Being a parent myself now and looking back I would have died if someone would have ever said anything was wrong with my child. In your eyes there is nothing wrong with your child, they are perfect, I get it for sure. I also freak out myself when I have a new black bump on my arm, call the doctor because I think it’s a new mole that is contagious and need immediately remove. Then as I am getting ready to head to the doctor the said mole washes off because it was just some chocolate from the Dunkin Donut I had eaten for breakfast.
On a serious note though, I knew that it was going to be harder, but I didn’t know what exactly she would be facing. When my sister found out that my niece had cerebral palsy I instantly Googled it and still wish I had never done that to this day. Really in any situation when someone tells you something and you Google it you probably aren’t going to see anything you really want to see. Like try Googling something and you will be shown the worst case scenarios.
How grateful I am to the parents, uncles, grandparents, siblings that can handle extreme cases of cerebral palsy. I don’t think I could do it, but then again, you never know what you can handle until it had been placed in your arms, right?
My niece came over and I held her in my arms, tears running down my face and just thought, “Okay, we are all going to be here for this little girl supporting her through everything she does.” I knew that this was a little girl that is going to overcome so much and work hard through all the tears to make it happen.
So let’s back up a bit and talk a bit about cerebral palsy. What is it? How do you cure it? Is there a cure? Are their different stages or levels of cerebral palsy? How do I make sure my kid doesn’t get it?
- Cerebral palsy is a condition caused by damage to the brain that usually occurs before, during or shortly after birth.
- It is neither progressive nor communicable which means it doesn’t get worse, and is not contagious.
- There is no “cure” but education, therapy and applied technology can help someone with cerebral palsy lead productive lives
- It can range from mild to severe.
Does that help you understand this better? I honestly knew nothing and had to make sure that I was going to be just as educated. I didn’t want to be an uncle that didn’t know what was going on with my niece’s health.
Come to find out, my niece had a in utero stroke, and that is how she was born with cerebral palsy. So there wasn’t anything anyone could have done to make it so that this didn’t happen. She has a mild case of cerebral palsy, but don’t think for a second that since it’s only mild that it’s not that bad.
One time I went with my sister and niece to Primary Children’s Hospital here in Utah. They were going to be giving my niece a shot of Botox in the deep muscle of her leg. This is caused because her bones grow faster than her muscles which causes her to walk on her toes because her foot can’t flatten since the muscles are so tight. Now a regular needle is nothing, but for these shots the needles are as wide as a pen. Okay, not really, but they are much bigger.
My sister tells me that she doesn’t get put under for this, but it causes a lot of pain. I always remember when I was in the most pain in my life the things that I saw. I didn’t want my niece looking at my sister when she was having to go through such pain. I wanted to be holding her hand and have her looking at me. I can’t begin to tell you the pain I saw in her eyes, yet the strength this girl had from knowing that everything would shortly be over and okay. But having to watch your child, niece, friend, anyone go through that is absolutely heart wrenching.
From getting multiple casts put on her foot to help stretch the muscles, shots so severe that she eventually had to be put under and hours or physical therapy my niece has progressed immensely.
Recently we were able to attend one her spring dance performance. Here was a girl that would walk on stage scared, nervous and had a hard time moving around like the other girls. This time she walked on the stage confidently. Total excitement rushed through my entire body seeing her walk onto the stage knowing every move and doing them in complete sync with the others was amazing.
She still has a long road ahead of her, but to be able to see the complete change that I saw when she was little to where she is now blows me away. I am truly grateful to have her in my life and how much she has taught me. I can’t wait for her to have my little girl to play with, help us dress, teach all her favorite dance moves and have fun sleepovers.
Don’t let a handicap hold you or your children back. You’ll be surprised at what they can do and it will change your life forever. If you want to know more about cerebral palsy or would like to donate to helping families with kids with cerebral palsy you can go here.